Dual action

From Jeanne Hambleton’s FMS Global News Desk
By Sandra Flahive (FiftySomething) January 10 2009

Bill and Susan Steffey of Grimes both have seen great physical improvements since they began exercising together at the Wellness Center at Mercy Medical Center.

Susan, 55, first started a regular workout regimen in July on the advice of her rheumatologist. Bill, 60, joined her a couple months later, hoping to lose weight and lower his cholesterol.

Three days a week, the couple attends a low-impact aerobics class that’s especially tailored to older adults. They warm up on the treadmill before class. Afterward, Bill hits the weights while Susan gets on the elliptical machine.

Both have lost weight since they began exercising regularly. Susan, who has arthritis, fibromyalgia and a pulmonary disease, says her muscles and joints are stronger and her lung capacity has improved.

Through weight training, Bill says he has been able to strengthen his bad knee and can now get up stairs without using the handrail to pull himself up.

“Neither one of us will go without the other one,” Susan says of their workouts. “That’s a huge motivator because you feel guilty. And we’ve made great friends.”

It has also given them a chance to spend more together and become closer, she says.

Because his wife’s health and stamina have improved, they are considering taking vacations, Bill says. That includes travelling to Indianapolis for a NASCAR race in July.

“Now that she is working (out) … she has got a little stronger, and we are talking about doing those things again together,” he says.

What a difference a year makes. A year is about how long Ankeny couple Bill Riley Jr. and his wife, Bridget, have been regulars at the Aspen Active Fitness Center in the West Glen Town Center.

With the help of their respective personal trainers, the Rileys say their lives have changed dramatically. The two – who were not regular exercisers – now give each other workout tips, regularly check on one another’s progress and have bought fitness equipment to use at home.

They say they feel better, have replaced body fat with muscle, eat more healthfully and are excited about the future.

“We are enjoying this. We are feeling that we are doing something for ourselves and not just letting ‘old man time’ chip away at us,” says Bill, 51. “We are feeling a lot better about being 60, 65, 70. We plan on being very active … and you cannot do that without your health. We made the decision to start that now, and we are glad we did it.”

In the past, fitness clubs had been intimidating and uncomfortable places for him and his wife, Bill says. Then he met certified personal trainer Mickey Pesek at Aspen Athletic Fitness Center.

“The personal training has made a huge difference in our outlook and opinions of joining a gym,” says Bill, whose triglycerides, cholesterol and blood pressure have decreased.

Bridget, an oncology nurse, says several factors influenced her to join her husband in getting fit: turning 50, her mother having a massive stroke a year ago and seeing how good her husband was feeling.

Bridget works with certified personal trainer Trista Manikowske. “She makes me feel confident and accomplished,” she says. “It is probably the best I have felt health-wise since I was 20.”

She says she feels healthier, has a better attitude about herself and sleeps better. The couple rarely eats out anymore, she says, and have added more fish and protein to their diet.

“We talk about growing old together and walking together and being outdoors. We talk about doing vacations that involve a lot of walking … and keeping our hearts healthy and blood pressure good,” Bridget says.

Setting goals together helps the two individuals be supportive of, and accountable to, each other, says Manikowske, the personal trainer. It is also a good idea to write down those goals.

“People with written goals accomplish five to 10 times as much as people who have never taken the time to actually write them down. It helps you remember what they are,” she says.

7 Tips for Exercising in Tandem
Certified trainers Trista Manikowske and Mickey Pesek offer these suggestions for couples working together toward physical fitness.

• Make a plan together and stick to it. Devise a workout schedule and, if you are working out separately, ask each other questions about your progress.

• Decide on a reward for meeting your goals. Looking forward to a vacation, for example, can motivate and encourage you.

• Find fun physical activities you can do together.

• Plan healthful meals, shop for groceries and cook as a couple.

• When going out to eat, split portions with each other.

• Get the whole family involved in eating more healthfully and exercising.

• For a spouse or significant other reluctant to get more physically active, give a gym membership as a birthday or anniversary gift or invite the person to work out with you. Some personal trainers offer “buddy sessions,” where two people get personal training together for an hour.

Good advice….My thanks to the Desmoine Register http://www.desmoinesregister.com/article/20090110/FIFTYSOMETHING/301110005/-1/SPORTS12

European Network of Fibromyalgia Associations

From the desk of Jeanne Hambleton

Members of the European Parliament (MEPs) adopt written declaration 69/2008 on fibromyalgia initiated by five deputies and the European Network of Fibromyalgia Associations (ENFA).

Brussels (16.12.2008) – Written Declaration 69/2008 on fibromyalgia has been a success in the European Parliament by finding the necessary quorum of signatories of 393 deputies giving their support. The Written Declaration was initiated by five key MEPs active on health at the European Parliament: Mr. Adamou, Ms. Brepoels, Ms. Dičkuté, Mr. Popa and Ms. Sinnott. These MEPs decided to launch the declaration during the celebratory meeting of the 1st European Fibromyalgia Awareness Day in May 2008, organized by ENFA

The Written Declaration is calling on the European Union to recognize fibromyalgia in Europe as a disease, as WHO did in 1992. It is estimated that 14 million people in Europe suffer from fibromyalgia and the condition is more prevalent with women (87% of total prevalence).

Fibromyalgia is a complex disease with a variety of symptoms in addition to the defining symptom – chronic widespread pain. These include fatigue, non-restorative sleep, morning stiffness, irritable bowel and bladder, restless legs, depression, anxiety and cognitive dysfunction often referred to as “fibro fog.” All of these symptoms cause serious limitations in patients’ ability to perform ordinary daily chores and work and severely affect their quality of life. Some scientists believe that there is an abnormality in how the body responds to pain, and particularly a heightened sensitivity to stimuli.

Fibromyalgia imposes large economic burdens on society as well as on affected individuals. A study shows that an average patient in Europe consults up to 7 physicians and takes multiple medications over 5-7 years before receiving the correct diagnosis. The debilitating symptoms often result in lost work days, lost income and disability payments. Research in the UK has shown that diagnosis and positive management of Fibromyalgia reduce healthcare cost by avoiding unnecessary investigations and consultations

Thus, the European Parliament is calling through this declaration, for the European Commission and the Council, to help raise awareness of the condition and facilitate access to information for health professionals and patients, by supporting European and national awareness campaigns; to encourage Member States to improve access to diagnosis and treatment; to facilitate research on fibromyalgia through the work programmes of the EU 7th Framework Programme for Research and future research programmes; and finally to facilitate the development of programmes for collecting data on fibromyalgia.

Educating healthcare professionals, patients and the public to promote better understanding and management of Fibromyalgia will benefit patients, healthcare providers and the society.
A Written Declaration is a text of up to 200 words on a matter falling within the European Union’s sphere of activities. MEPs can use them in order to launch or relaunch a debate on a subject that comes within the EU’s remit. At the end of the lapsing date (3 months after its launch on 1 September for the declaration 69/2008) the declaration is forwarded to the institutions named in the text, together with the names of the signatories.

Contact:
European Network of Fibromyalgia Associations (ENFA)
Mr. Robert Boelhouwer
President of ENFA
contact@enfa-europe.eu
www.enfa-europe.eu

About ENFA
ENFA is a network of patient association and support groups working in close consultation with the national association in the relevant country. Our joint missions are to conquer the myths and misunderstandings around Fibromyalgia. The network will help collectively push forward the boundaries which currently exist in understanding, experiencing and treatment of Fibromyalgia. Our main goal is to see fibromyalgia receiving the recognition it deserves across Europe as an illness in its own right.

Exciting news for Fibromyalgia Research!

MAKING MUSIC THE FIBROMYALGIA WAY

By Jeanne Hambleton © 2008

They say fibromyalgia runs in families, but my latest news shows that in one family both music and fibromyalgia research are excited about ‘Hard Times’.
Spanning three generations, a granddad (a very young one), two of his grandchildren and a nephew, are all involved in writing, playing and selling their music for their first CD ‘Hard Times’ to raise funds for research. They hope to find a cure for fibromyalgia for granddad and millions of other fibromyalgia sufferers through research at the University of Michigan, in Ann Arbor. Michigan.
Richard Lee (aka Rick Usher of FMS Global News), Justin (16), Autumn (10) and nephew Tim (29) have been busy in the studio laying down some tracks for their first CD that is dedicated to fibromyalgia and Gulf War Syndrome veterans.
Richard told me, “I am a musician with fibromyalgia and fibromyalgia research is one of the most important things I can think of to use the gift of music for. Where it will go from here I have no idea, but I am ready for whatever develops. These songs are free to download ahead of the CD release that will be in the very near future.
Richard said he had written most of the songs with the exception of Summer Time (a George Gershwin Tribute) and Tobacco Road (a tribute to John Laudermilk the author of the song, and “Simple Man” which is Tim’s contribution as well as a song he wrote called “Believe”.) – both great favourites of his.
“However these are my renditions of these songs and they are different from the originals by a significant degree. The rest are songs I have written and these will be available for fibromyalgia research funding soon on CD or by download,” said Richard.
The band is set up with Rick (Richard Lee) Usher, Lead and Bass Guitar, Vocals, Harmonica, Keyboards: Justin Usher, Keyboards, Guitar: Tim Upton, Guitar, Vocals. The newest member of the group is Rick’s granddaughter, Autumn (10) who is playing piano/keyboards.
Rick said, “After only one lesson she can pick out the melody of all my songs. I am 52, so we have a broad age range (107 years) and we are all related.
“The youngsters are thrilled to be helping me with my fibromyalgia and the research. It gives me a big kick to watch their enthusiasm and their support. They are great kids and I love them to bits for helping me. Their grandmother and their mother, who has FMS, are pretty proud of them too.”

For more information log on to
http://www.myspace.com/richardleeandhardtimes

FM FRESEARCH ACROSS THE POND
Conscious that fibromyalgia is reported to be reaching world wide epidemic proportions, Richard, hopes to introduce the first UK Fibro What CD for downloading when his own Cd is launched. Written and played by Dom Collins, an award winning comedy singer. Dom donated the music with three very funny backing tracks, to help fund UK research. Now the Fibro What CD is being sold ‘across the pond’ to support research funding in the UK. Log on to http://www.domcollins.co.uk/MYSPACE for more details.

PERSONAL HARD TIMES
I asked Richard to tell me something about his fibromyalgia and his driving force.
He said, “My fibro first began to be a major problem when I was about 24, so I have had fibromyalgia most of my life. I was an electronics engineer and finally in my 30′s had to give up my career. I had just bought a home to raise my family and had a new mortgage and I suddenly could not work anymore.
“Somehow with my wife’s support we managed to survive. Staying together and being close as a family is very important when you have fibromyalgia. My oldest daughter also has fibromyalgia, and her son Justin is part of the band.

OUR MUSIC
“The music we play is a bit of everything. Some is blues and jazz and folk and some good old rock n’ roll. I write songs about real life – what I have lived and learned.
“One song that is about my experience with fibro is called “Learning to dance in the rain”. I encourage anyone that has fibro and a MY SPACE website, to add this song to their profile. I’ll have a better version of the song up soon.

RESEARCH SUFFERS IN HARD TIMES
“I truly believe that research into fibromyalgia is at a stage where new discoveries are within our grasp. Sadly with the economic troubles we are all facing today, research funding is not keeping pace with the science we badly need to develop.
“I have met Dr. Daniel Clauw at the University of Michigan and want to support his fibromyalgia research. You may recall that Dr. Clauw was the one that proved fibromyalgia is not “all in our head” and his contributions to fibromyalgia research are well known worldwide.
“We originally planned a benefit concert at Hill Auditorium for Sept 21 of this year but with the economy the way it is corporate sponsors are a bit more difficult to find so the date will most likely be moved back unless we get a miracle. In my world miracles happen often.
“We will soon be producing a CD which will further help raise funds for research and will have a dozen or so songs on iTunes soon that will also benefit research.”
Since another artist already used my last name I go by my first and middle name with the band. Hard Times is the name of the band because everybody knows hard times.”

Congratulations on your achievements Rick, given you have fibromyalgia and a passion to find a cure. Well done to you and your young team. I hope lots of people like your music and help you build up a good fund for research. .
The group hope’s to add other venues and will consider fund raising for cancer research funding in the future’

Fibromyalgia and Chronic Fatigue Self-Help Group Meeting

FOR IMMEDIATE PRESS RELEASE

Thursday, June 12th, 2008

The FIBROMYALGIA and CHRONIC FATIGUE SELF-HELP GROUP will meet Thursday, June12th, 2008 at 6:30 PM

at the Quest-4-Life Wellness Center, located at Lenoir Mall, Lenoir, N . C.

Denise Lindsay, BS, LMBT of Wellspring Therapeutic Massage Care will present the program. She will include a demonstration of her own “Gentle Massage Technique for Fibromyalgia” and will also offer the group sample sessions free of charge. There will be no meeting July and August.

For more info, call Nancy at 828-758-2156 or Lindy at 828-754-2064.

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SLEEPLESS IN SEATTLE, SINGAPORE OR SOUTHEND?

by Jeanne Hambleton © 2008
NFA Leader Against Pain-Advocate

Quite apart from the pain and fatigue we endure as fibromites, one of the other biggest problems we have is being sleepless – in Seattle, Singapore or Southend – and missing out on our zzz’s. If you are anything like me, I am often still wide eyed at 4.30am worrying about how few hours sleep I would have if I actually dropped off to sleep immediately.

That is a strange expression, ‘dropping off to sleep’. It sounds as is you are falling off a log. But then some folk sleep like a log… the mind boggles! How does a log sleep?

To be serious, sleep, as we all know, is so very important as this is when our body takes care of the maintenance and repairs. Without proper sleep we are endangering our health.
With this in mind I decided to find help from the National Sleep Foundation – a great website full of helpful advice. I discovered that the sleep environment plays a big part in the ‘getting to sleep’ process.

The NSF article on this subject asks if a dripping tap keeps you awake, or the noise of a fan or a washing machine causes you some disturbance?

Have you tossed and turned because you are too hot, or too cold? What about the barking dog or cat that jumps onto your bed – have they ever disrupted your zzz’s?

Sorry, I must tell you a silly true story. When I was young, single and silly I had a stupid boxer dog who followed me everywhere – even to bed. All I can say is that happiness is sleeping against the wall in a single bed with the dog on the outside edge, Done in reverse as I found to my cost, you might as well sleep in the floor.

But back to business. Most of us recognize that the sleep environment can greatly affect how (and if) we sleep, but are you doing everything you can to make the bedroom a sleep haven? Is it time to make your bedroom more sleep-friendly? Will you try almost anything to make you sleep better? Well please take note about the sleep-stealers.

Noise and Sleep Stealers
Noises at levels as low as 40 decibels or as high as 70 decibels generally keep us awake. That means that a dripping tap can steal your sleep, as well as the next-door neighbor’s blaring stereo. These noises can have as great an impact on your sleep as ‘out-of-the-ordinary noises’. Studies show that sirens and traffic noise from a street can actually become soothing to longtime city dwellers. They would cringe at the thought of sleeping in a quiet desert or mountain climate, just as the absence of the tick, tick, tick of your favorite clock, while you try to sleep at a hotel, can become a sleep stealer.

What to do: Try to block out unwanted sounds with earplugs or use “white noise” such as a fan or an air conditioner. Take your favorite clock with you when you travel in order to recreate familiar sounds that help you sleep (as long as they will not keep your neighbors awake!)

Temperature
In most cases, temperatures above 75 degrees Fahrenheit and below 54 degrees will disrupt sleep, but even sleep researchers fail to agree on the ideal temperature for sleep. The point at which sleep is interrupted due to temperature or climate conditions varies from person to person and can be affected by bed clothes and bedding materials selected by the sleeper. In general, most sleep scientists believe that a slightly cool room contributes to good sleep. That is because it mimics what happens inside the body. The body’s internal temperature drops during the night to its lowest level. For good sleepers, this occurs about four hours after they begin sleeping.

What to do: In general, sleep scientists recommend keeping your room slightly cool — but achieving the ideal temperature is not always simple. What do you do if you and your partner disagree about room temperature? Turning the thermostat down at night in cold weather saves on fuel bills and sets the stage for sleep. Blankets, comforters or electric blankets can lock in heat without feeling too heavy or confining. Or the heat-seeking partner might dress in warmer bedclothes while the warmer partner might opt not to wear sleep clothes or bed covering. In summer, a room that is too hot can also be disruptive. In fact, research suggests that a hot sleeping environment leads to more wake time and lighter sleep at night with awakenings becoming more frequent. An air conditioner or fan can help, and a humidifier can provide relief if you are suffering from a sore throat or dryness in your nose.

Light
Much of our sleep patterns – feeling sleepy at night and awake during the day – are regulated by light and darkness. Light – strong light, like bright outdoor light (which is brighter than indoor light even on cloudy days) – is the most powerful regulator of our biological clock. The biological clock influences when we feel sleepy and when we feel alert. As a result, finding the balance of light and darkness exposure is important. Bright light helps to keep you awake during the day, but during sleep, bright lights can be disturbing.

What to do: Make sure to expose yourself to enough bright light during the day. Find time for sunlight, or purchase a light box or light visor to supplement your exposure to light. At bedtime, think dark: a dark bedroom contributes to better sleep. Try light-blocking curtains, drapes or an eye mask. If you find yourself waking earlier than you would like, try increasing your exposure to bright light in the evening. It may delay sleep onset but as little as one to two hours of evening bright light exposure may help you sleep longer in the morning. Also, make sure to avoid light if you wake up in the middle of the night to go to the bathroom. Minimize light by using a low illumination night-light.

Sleeping Surface
For the most part, we know people sleep better when horizontal and not cramped by space. Not much research has been done to understand the sleeping surface, but it is clear that it plays a role in getting a good night’s sleep. For example, tossing and turning on a lumpy 20-year-old mattress that does not provide support for your back or neck. This can stop you from getting the sleep you need and make you very sleepy (and stiff) the next day. Mattress experts say that too often consumers believe that ultra-firm mattresses are good for them, but research on patients with back pain found this was not true. A more supple, comforting mattress may lead to better sleep.

Also, know your pillow. Research shows that pillows house thousands of fungal spores, which can trigger allergies and compromise a weak immune system. The research shows that synthetic pillows held a greater amount of bacteria than feather pillows. One study found that synthetic pillows had as much as five times more dust-mite fecal matter than feather pillows. Feather pillows have thick casing to keeps feathers in. So, not only can a pillow affect your posture and quality of sleep, but it can also affect your allergies or asthma and make it very difficult to get a good night’s rest.

What to do: Give yourself enough space to sleep. If you share a bed with a partner, make sure it is large enough to give both of you room to move around. Replace an old mattress with a new one, and choose a pillow and mattress that fits you best (soft, firm, thick, thin?) and will be comfortable throughout the whole night. Consumer Reports recently found that consumers who spent 15 minutes or more testing each mattress at the store were more likely to be happy with their purchase. Also, consider encasing your pillow in a plastic cover under your pillowcase to keep dust-mites from interfering with your sleep and allergy or asthma symptoms.

Other Factors
Bed partners with sleep disorders can negatively impact your sleep. Have you ever been kept awake by your partner’s snoring? Or been jolted out of a sound sleep by your partner’s restless movements? If so, you are not alone. According to NSF’s Sleep in America poll, 67% of respondents reported that their partner snores, 27% said their intimate relationship was affected because they were too sleepy, and 38% said they have had problems in their relationship due to their partner’s sleep disorder.

What to do: Start off by talking to your partner about the problem. If he/she has not sought treatment for a potential sleep disorder, encourage them to see a doctor. Consider earplugs if snoring prevents your sleep. Try to create a sleeping arrangement that is comfortable for both you and your partner. Keep the lines of communication open.

TVs, computers, and work in the bedroom are sleep-stealing culprits. NSF’s Sleep in America poll found that 87% of respondents watched TV within an hour of going to bed at least a few nights a week. Doing work, watching TV and using the computer, both close to bedtime and especially in the bedroom, hinders quality sleep. Violent shows, news reports and stories before bedtime can be agitating. The sleep environment should be used only for sleep and sex.

What to do: Avoid highly engaging activities such as watching dramatic TV or doing work close to bedtime. Keep the TV and computer out of your bedroom! Make your bedroom a place that is focused around sleep.

Three in a bed
Cats and dogs can be cuddly in bed, but they may be interfering with your sleep. Anyone who has slept with another person in their bed knows that sharing a sleeping space can be disruptive, but when your four-legged friend gets added to the mix, it becomes even more complicated! While a pet can make your sleep environment more comfortable, the cat or dog is not mindful of whether it is interfering with your sleep.

What to do: Think about providing your dog or cat with a bed in your bedroom, instead of sharing your bed. Well-rested pet owners will have more energy and love to give to their pets!

My thanks to the National Sleep Foundation and Jessica Steinitz for allowing me to share this information with you. (www.sleepfoundation.org). Sweet dreams but maybe that is another story. Take care and talk again soon. Jeanne

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MAY 12 AND FIBRO WHAT DAY

By Jeanne Hambleton 2008

Every year on May 12 people suffering with fibromyalgia raise awareness about this invisible disability with the public who frequently ask, “Fibro what?’

For the first time ever the fibromites will be able to sing-along to a new singles CD called Fibro what? to provide the answer, while encouraging folk to by the CD to fund research to find a cure. This is thanks to a benevolent Manchester postman who wanted to help two million fibromites find a cure for their 24/7 illness.

Not only will the public hear the upbeat lyrics comedy singer song writer Dom Collins has set to music, describing the condition – aches and pains, sleep disorder, memory loss – but they can enjoy to three cheeky tongue in songs donated by the FM benefactor. Laughter is the best medicine they say but it is not necessary to have fibromyalgia to laugh with Dom Collins while supporting fibromyalgia research. Without government funding it is hoped the money from sales will help research and maybe lead to a cure.

Dom, who is well known on the Manchester and northern circuits for his good clean humour and funny songs about every day life, wrote the Fibro What song to help his friend, fibromite Christine Thomson.

“I wanted to do something to raise awareness for May 12 and when Dom offered to help I was delighted. I am fed up with the lack of government funding and doctors still telling us it is all in our heads. I am anxious everyone should know more about our invisible disability. I also felt it was important to highlight the need for research to find a cure. So the proceeds from sales will go towards Jeanne Hambleton’s new book PAIN 24/7 The Fibromyalgia Jigsaw©, due to be self published in the autumn, as the sales money from the book will go to research. The more books we sell the more money for research,” said Chris.

Holding a new contract with a well-known agent Dom expects to be busy playing, singing and making people laugh for the foreseeable future. His reviews compare him to Mike Harding and Richard Digance and claim Dom will go far. With a cheeky grin Dom said he loves to entertain and is available for any special occasion from divorces, funerals, vasectomies, wedding, birthdays and corporate affairs.

Delighted with the new CD, which uses her photographs, Chris has offered Fibro what? to fibromyalgia support groups up and down the UK to sell and play on May 12 at the special events to raise awareness.

ROYAL MALE

This is the second time this year that Dom, who is a postman, has been benevolent. In January he wrote ‘Jack’s Song’s, a tribute to Jack Judge, the writer of the WWI favourite ‘It’s a long way to Tipperary’. Dom donated half the proceeds of this CD to the Army Benevolent Fund (North West) and he launched the CD at the Tipperary Café in Stalybridge, Manchester, the site of the old Grand Theatre where the song was written in1912..

This first charity CD attracted letters of support from four members of the Royal family, HM the Queen who sent a lovely letter of thanks; HRH Prince Charles, the Princess Royal, HRH Princess Anne and HRH Prince Edward who all welcomed his support for the Army Benevolent Fund. He also received nice letters of congratulations from our PM Gordon Brown and Leader of the Opposition David Cameron. These can be viewed on Dom’s Blog on his website (www.domcollins.co.uk). Needless to say copies of Fibro What will be winging their way to Buckingham Palace.

But Fibro What? CD is just part of the story? There is a new fibromyalgia book on the way later this year. Written as a labour of love and self-published to preserve as much money as possible, sales money will contribute to research to find a cure for fibromyalgia – the pain fibromites live with for the rest of their lives.

With the present government making no effort to put aside a substantial sum of money for research, fibromites must do it themselves. Every Fibro What Cd is raising money towards research. For more information about the music or fibromyalgia email fibrowhat@mac.com or log on to http://fibrowhat1.wordpress.com. There are also Fibro What tee shirts and tote bags available.

OTHER MAY 12 EVENTS

May 12 is not just the International Fibromyalgia Awareness Day, but it is shared with the CFS/ME organisations, and is also listed as the International Nurses Day.

May 12 is the International Fibromyalgia Awareness Day, the birthday of Florence Nightingale, who was believed to have suffered with fibromyalgia and chronic fatigue when she returned from the Crimean War.

Born to wealthy parents in 1820 in Florence, Italy, she was described as a wild child. She took 36 nurses to British military hospital in Constantinople in 1854 when the Crimean War broke out. This was the first time female nurses had served in military hospitals under war conditions. She became known as The Lady of the Lamp.

The work of Florence Nightingale, the English army nurse, led to the creation of the International Red Cross. In her 30s Florence Nightingale suffered a paralyzing FM/CFS/ME-like illness and spent in the last 50 years of her life virtually bedridden. In hindsight some say she suffered with fibromyalgia. In spite of her illness, she founded the first School of Nursing. It is fitting that the determination of this lady of the late 19th century became an inspiration to victims of CIND – FMS/CFS/ME/PVFS/MCS (fibromyalgia, chronic fatigue, myalgic encephalopathy, post viral fatigue syndrome, multiple chemical sensitivity) and other long-term chronic pain illnesses in the late 20th century.

In East Wellow, in Hampshire, UK, at St Margaret’s Church, where Florence Nightingale was buried in 1910, a service is held on the Sunday after May 12. There is a significant memorial in the graveyard.

The website Answers.com tells us that every year in London in Westminster Abbey on May 12 there is a service during which a symbolic lamp is carried from the Nurses’ Chapel into the Abbey. This is passed from one nurse to another before the Dean of Westminster Abbey places it on the High Altar. It is said this is symbolic of passing the knowledge of nursing from one to another.

Wikipeda, the free Internet encyclopedia, provides a long list of important events which happened on May 12 including the Coronation of King George VI in 1937, the Queen’s father; in 1942 on this fateful day 1,500 Jews were sent to the gas chambers in Auschwitz; and on a brighter note on May 12 1965 the Soviet spacecraft Luna 5 crashed on the Moon.

INSPIRATION FOR MAY 12
The Awareness Day commemoration was the inspiration of Tom Hennessy, a American patient with chronic immunological and neurological diseases. His thoughts to link with
Florence Nightingale’s birth date galvanised the CIND community to pressurise governments to respond to these devastating illnesses. These days Tom is constantly bedridden and too ill to even answer emails, which still arrive from all over the world.

According to the CIND website symptoms of the chronic immunological and neurological diseases included cognitive problems, chronic muscle and joint pain, extremely poor stamina, and numerous other symptoms. The number of those suffering with these problems increased dramatically. In the 1980s, and patients were often dismissed by the medical profession as suffering from psychosomatic illness. It still happens today with some GPs.

As the illnesses became more widespread many people were so weak that they could not care for themselves. The mystery aches, pains and fatigue continued to spread unchecked with little response from government of the day. In order to raise awareness of the seriousness of the situation, the response was the MAY 12 International Awareness Day.
BETTER LATE THAN NEVER

Two days after the world celebrations the Fibro What composer, Dom Collins, is visiting the South Manchester Fibromyalgia Support Group in Sale on the evening on Thursday, May 15, with fibromite Christine Thomson, when he will be playing his guitar and singing Fibro What? to those with fibromyalgia.

This is a small group run by Leader Georgina Jameson with just 15 members including 4 men with fibromyalgia. The group covers Greater Manchester and Cheshire. It is unusual to have such a high percentage of men with FM in a group – almost a third. Members enjoy socializing, speakers, a library and a helpline. For more information about the south Manchester meetings contact the Leader. (georginajameson@talktalk.net)

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AWARENESS DAY WILL SEE MPs AND FIBROMITES TAKE COFFEE

By Jeanne Hambleton

The Fibromyalgia Association UK will be raising awareness in a big way on the International Fibromyalgia Awareness Day on Monday 12th May, when fibromites from all over the UK, and MPs meet for coffee at Portcullis House Westminster.

Chairman of the Trustees of FMA UK, Pam Stewart said, “Our aim is to make MPs aware of how desperate the situation is for so many fibromyalgia sufferers living in their constituencies. We need to let MPs know of the day-to-day struggles people with fibromyalgia battle against just to lead as near ‘normal’ a life. We need their help and support. Fibromyalgia sufferers deserve a voice and deserve to be listened to.
“We need to raise the profile of fibromyalgia in order to persuade decision makers to adopt these guidelines officially so that full treatment programmes can be made available to all sufferers throughout the UK.”
Recent e-petitions to the No. 10 Downing Street website have raised the question of treatments and the government responses have indicated that it is up to each Primary Care Trusts to decide priorities for their area but, without clear national guidance, fibromyalgia mostly slips to the bottom of the list if it is considered at all.

Although more doctors are becoming knowledgeable about fibromyalgia, many people who contact Fibromyalgia Association UK say that having read about the symptoms of fibromyalgia, it has been down to them to suggest the possibility of this as a diagnosis to their GP. This diagnosis stills seems to be overlooked, despite the prevalence of the condition.

Diagnosis of fibromyalgia is just the beginning of the problems. There is still the minefield of treatment options. At worst some patients are still being told, “There is nothing that can be done; there is no cure; learn to live with it. It’s psychological – all in your mind”. At best there are one or two centres that offer a range of managing and coping strategies using pain relief units, physiotherapists, counsellors, hydrotherapy and other treatments. Unfortunately most of the alternative therapies are in the private sector and sufferers are unable to finance these long term or even short term. There are also many hospitals with very good supportive departments but, unfortunately, this is a postcode lottery.
“The method of diagnosis, initially developed for research purposes, has been shown to be both effective and simple. On assessment, a careful health history is taken. If the patient reports widespread pain for more than three months together with pain in at least 11 out of 18 tender point sites when they are pressed, then a diagnosis of fibromyalgia can be made.   ‘Widespread pain’ means pain above and below the waist and on both sides of the body. The ‘tender points’, or spots of extreme tenderness, are rarely noticed by the patient until they are pressed,” said the chairman. 
Most people must wait for an appointment with a consultant, usually a rheumatologist, before getting a confirmed diagnosed, when it should be possible to be diagnosed by the GP.

Sufferers can spend years going backwards and forwards to their GP with what seems to be many different conditions. During this time their general health often deteriorates, employment may become difficult or impossible and family and friends can become increasingly frustrated and unsupportive. There are instances where diagnosis is made fairly quickly, within a year, but the majority can take 3 – 5 years.

Fibromyalgia is a painful, non-articular condition predominantly involving muscle; it is the most common cause of chronic, widespread musculoskeletal pain and affects between 2%-3% of the UK population. Although there is a reliable diagnosis for fibromyalgia and treatment guidelines, many people still wait years to get diagnosed only to be told there is no treatment.
The European League Against Rheumatism (EULAR) has issued the first guidelines for the treatment of fibromyalgia syndrome (FMS) and published them in the September 2007 issue of the Annals of Rheumatic Diseases. This 9 point plan covers the treatment and diagnosis of fibromyalgia. Whilst these guidelines are not yet adopted by the National Institute for Health and Clinical Excellence (NICE) in the UK, they can be seen as a significant step forward.
For more information of fibromyalgia in the UK please send a 42p sae to:
Fibromyalgia Association UK, PO Box 206, Stourbridge, West Midlands, DY9 8YL
or visit the website http://www.fmauk.org.

For further information relating to this press release please contact Jean Turner 0845 3452603 jean@rfmsg.freeserve.co.uk

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Fibromyalgia and Chronic Fatigue Self-Help Group Meeting

Thursday, May 8th, 2008

Shelia Brown, RN

The FIBROMYALGIA and CHRONIC FATIGUE SELF-HELP GROUP will meet Thursday, May 8th, 2008 at 7:00 PM at the Quest-4-Life Wellness Center, located at Lenoir Mall, Lenoir, N . C. Sheila Brown, a Registered Nurse with Caldwell Memorial Hospital, will present the program “Maximizing Brain Power” or as she calls it: “Reach For The Stars” and “Laughter Therapy”. She will present easy and fun techniques that can be learned in one evening that increase relaxation, decrease stress, and enhance brain functioning! Sheila is a frequent motivational speaker and she promises a fun filled evening with lots of laughter! Next month’s meeting will be Thursday, June 12th at 6:30pm with Denise Lindsay, BS, LMBT of Wellspring Therapeutic Massage Care. Denise will demonstrate her own “Gentle Massage Technique for Fibromyalgia” and will offer the group sample sessions free of charge. There will be no meeting July and August. For more info, call Nancy Clay at 828-758-2156 or Lindy Wilcox at 828-754-2064.

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KIDS STUFF

by Jeanne Hambleton © 2008
NFA Leader Against Pain-Advocate

Almost daily I am saddened to read in the national press about another ‘bright’ idea to erode the innocence of childhood. Fancy underwear (‘bra’ and ‘pants’) for tiny tots instead of vests and knickers – the morning after pill for very young schoolgirls – the list goes on and on. Maybe it is all down to the march of time, technology and television.

As a child I wore what I was given or I could expect a slap around the legs and sent upstairs to bed in a room where there was only a bed. I even wore the baggy hated navy gym knicks with elastic gathering around the legs and waist. These were made of some ghastly navy blue interlock material with a fleecy lining.

Having said that a pair of navy gym knicks might not go a miss as a fibromite on these cold mornings when the winter gets into the bones. Do you think someone might market them just for fibromites? You have heard of Bridget Jones drawers – made for us they could be called Frozen Fibro Fillies drawers. I wonder how many of us would welcome them to keep warm.

But I started out writing about childhood innocence and this came about when I received the following information, which allegedly claims that children had replied to questions in the science lesson.

These are certainly some smart answers! But some of these replies did make me laugh out loud. Hope you enjoy them as much as I did.

Q: Name the four seasons.

A: Salt, pepper, mustard and vinegar.

Q: Explain one of the processes by which water can be made safe to drink.

A: Flirtation makes water safe to drink because it removes large 
pollutants like grit, sand, dead sheep and canoeists.

Q: How is dew formed?

A: The sun shines down on the leaves and makes them perspire.

Q: How can you delay milk turning sour? (brilliant, I love this!)

A: Keep it in the cow.

Q: What causes the tides in the oceans?
A: The tides are a fight between the Earth and the Moon. All water tends to flow towards the moon, because there is no water on the moon, and nature hates a vacuum. I forget where the sun joins in this fight.

Q: What are steroids?

A: Things for keeping carpets still on the stairs.

Q: What happens to your body as you age?

A: When you get old, so do your bowels and you get intercontinental

Q: What happens to a boy when he reaches puberty?

A: He says good-bye to his boyhood and looks forward to his adultery.

Q: Name a major disease associated with cigarettes.

A: Premature death.

Q: How are the main parts of the body categorized? ! ( e.g., abdomen)

A: The body is consisted into three parts — the brainium, the borax and the abdominal cavity. The brainium contains the brain; the borax contains the heart and lungs, and the abdominal cavity contains the five bowels A, E, I, O, and U.

Q: What is the fibula?

A: A small lie.

Q: What does “varicose” mean?

A: Nearby.

Q: Give the meaning of the term “Caesarian Section.”

A: The Caesarian Section is a district in Rome

Q: What does the word “benign” mean?’

A: Benign is what you will be after you be eight.

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FIBRO WHAT? FIGHTS BACK

by Jeanne Hambleton© 2008

How often have we all said we are sick of folk saying ‘fibro what’ when we try to describe how we feel? Help is at hand! It is now set to music and you just hand those folk the new Fibro What? singles CD and sit back and listen.

Not only will they hear the upbeat lyrics comedy singer song writer Dom Collins has set to music, all about our invisible condition, aches and pains, but you can both listen to three cheeky tongue in cheek songs donated by our man from Manchester, and have a good giggle. Laughter is the best medicine they say.

Our bright lad, well known on the northern circuits for his good clean humour and funny songs about every day life, has written the Fibro What song to help his friend, fibromite Christine Thomson.

“I wanted to do something to raise awareness for May 12 and when Dom offered to help I was delighted. I am fed up with the lack of government funding and doctors still telling us it is all in our heads, and I am anxious everyone should know more about our invisible disability. I also felt it was important to highlight the need for research to find a cure. So the proceeds from sales will go towards Jeanne Hambleton’s new book PAIN 24/7 The Fibromyalgia Jigsaw©, due to be published in the summer, as the sales money from the book will go to research. The more books we sell the more money for research,” said Chris.

While climbing the ladder of success, Dom’s work has also been recognised by two Royals, Princess Charles and Prince Edward, as well as PM Gordon Brown and the Leader of the Opposition David Cameron, who were all delighted to receive a copy of the Jack’s Song CD for the January anniversary. You can read the letters on Dom’s website.

Holding a new contract with a well-known agent Dom expects to be busy playing, singing and making people laugh for the foreseeable future. His reviews compare him to Mike Harding and Richard Digance and claim Dom will go far. With a cheeky grin Dom told us he loves to entertain and is available for any special occasion from divorces, funerals, vasectomies, wedding, birthdays and corporate affairs.

Both Chris and I are delighted to have worked with Dom in these early stages of his future career and one behalf of almost one and a half million fibromites, we cannot thank him enough for simply caring and helping to raise awareness about fibromyalgia.

Delighted with the new CD, which uses her photographs, Chris wants to offer the new CD to Fibromyalgia Support Groups to sell and play on May 12 at the special events to raise awareness about this rotten disability. This would also make sure fibromites, our members, have the chance to buy a copy.

This is the second time this year that Dom has been benevolent. In January he wrote ‘Jack’s Song’s, a tribute to Jack Judge, the writer of the WWI favourite ‘It’s a long way to Tipperary’. Dom donated the proceeds of this CD to the Army Benevolent Fund (North West).

His first charity CD attracted letters of support from four members of the Royal family, HM the Queen who sent a lovely letter of thanks; HRH Prince Charles, the Princess Royal, HRH Princess Ann and HRH Prince Edward who all welcomed his support for the Army Benevolent Fund. He also received nice letters of congratulations from our PM Gordon Brown and Leader of the Opposition David Cameron. These can be viewed on Doms Blog on his website. Needless to say copies of Fibro What will be winging their way to Buckingham Palace.

For more details about Dom and his work log on to http://www.domcollins.co.uk. If you click MY SPACE top right hand corner you will hear some of the funny backing tracks and a verse or two from the new Fibro What CD. The tracks include “A Girl called Chips”, “Can you lend me a tenner, Dad?” and “Does my ar.. look big in these?”

Copies of the new CD Fibro What are available from jeannehambleton @ mac.com (no spaces) and will cost £3.75 plus £1 p&p for a UK packing and postage…total £4.75. Overseas postage will be advised. We hope you enjoy the Fibro What? CD and that your friends want you to buy a copy for them. You don’t have to have fibromyalgia to have a good laugh with Dom Collins as well as supporting our mission. The proceeds will help research and maybe lead to a cure.

But Fibro What? CD is just part of the story? There is a new fibromyalgia book on the way later this year. Written as a labour of love and self-published to preserve as much money as possible, sales money will contribute to research to find a cure for fibromyalgia – the pain we live with for the rest of our lives. May 12 is International Fibromyalgia Awareness Day and we hope that you and your friends will be listening and laughing with Dom’s cheeky songs and selling copies to other folk to support the cause.

Later in the year for a week in September, it is UK Fibro Awareness Week. To celebrate this we will be running a cabaret dinner in West Sussex full of comedy, humour and mirth. We are planning a charity auction hopefully with some celebrity donations. If you have any souvenirs you feel able to donate we will be delighted. Please contact me.

With the present government making no effort to put aside a substantial sum of money for research, we have to do it ourselves with help from friends like you. Thank you. Take care Jeanne.

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